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Posted in Anosmia, Parosmia

Letter To My Nose.

Hello reader, if you’ve been following my blog you will by now be familiar with both my Anosmia and Parosmia so this should make sense. If not please have a look at my older posts especially the ones under the ‘Parosmia’ categories and you will know what this letter is talking about, and why my nose isn’t exactly popular these days. Why am I writing a letter to my nose? Well because I want to and sometimes writing things down helps, its how this blog started off in the first place after all!

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Dear Nose,

Why have you let me down so much?

I know its not directly your fault that my nerve fibres severed from you when I banged my head and now they don’t work properly anymore. But you could heal better instead of getting all of them mixed up leaving me with Parosmia.

Have you any idea how it feels to hardly taste my food and what I do taste is normally disgusting?

Its left me hating you quite a bit especially when you decided to leave me with one nostril that cant smell anything and the other constantly distorted. When I have to embarrass myself at the dinner table by having to press down on the nostril that gives me a horrible smell and taste, taking that experience away for a bit so that I can actually eat something!

Yes ok you’ve helped me discover writing and I don’t know if I would have tried that otherwise, but why cant you heal properly for me? Are you ever going to? Should I be grateful for what I’ve got back? Oh so many questions and you aren’t answering any one of them. You’ve certainly messed me up a lot.

Oh nice of you to give me the odd decent smell back like vanilla candles, but is that it? I wouldn’t mind perfume, cut grass, food cooking thank you very much! Also I know I can taste the four true tastes i.e. Salt, Sweet, Hot and Umami and maybe I should be grateful that I’ve got that much, but I’d also like umm let me see …. chocolate, spices, tomatoes, beef, chicken and the rest.

I’m trying not to blame you I’m really not. I suppose what I should be doing is helping you out by getting back into my smell training and trying to stick to it this time! Maybe that way we’ll both be encouraged….especially if it starts to work. If I’m not helping myself I’m not helping you either.

So I’m seeing Chrissi my smell trainer soon and I will be honest and tell her how I’m struggling. I know she’ll understand and you know her well enough these days. Hopefully she’ll get me back on track then you and I might be able to come to some sort of agreement. We could see eye to eye again. Ha, ha the irony!

So lets have a go at helping each other, work as a team instead and see how we get on.

Love (ish)

Debbie x

P.S. I’ll try and start loving you again if you love me back too.

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Posted in Parosmia

I’m Not Broken.


Do you know why I put those words as my heading? Because finally they are true. Yes I may be bruised a little….still a lot sometimes, but no longer broken.

I want to share a story with you from when I was broken because its a poignant one for me. The food thing. If you’ve read any of my earlier posts you’ll understand exactly what I mean…

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Messy party table that’s what you get from us!

When I first acquired Anosmia, I thought that was the worst it could get. Well you know they say it gets worse before it gets better, how true that is”.

A few months into this life changing, heart breaking condition, Parosmia added to my troubles. This is a distorted and normally horrible sense of smell and taste and can often happen following Anosmia. But I had Anosmia in one nostril and Parosmia in the other so that was fun…not.

I distinctly remember one particular incident that occurred when I was at my lowest. It was my Mums Birthday, so as is tradition in our family, we went out for a meal. I considered making my excuses and pulling out of it but I would have felt so guilty if I had. We got to the restaurant a lovely little place that I had fond memories of before I became ill, and all sat round the table. The moment I was dreading occurred…out came the menus. I stared at the long list of food choices and almost broke into a sweat. I knew that whatever I chose would taste horrible because of my Parosmia, at that moment I felt like crying. My family knew my dilemma and said things like try going for something bland, I know they were trying to be helpful but all I wanted to do was get out of there.

Well I eventually made my choice and as the food started emerging, I got smells coming through that were disgusting to my messed up nose, and started to feel sick. Once my meal was put down in front of me it could have been dog food for all the appeal it gave me. I gathered what little strength I had and put a forkful of food into my mouth. I wanted to gag it was so bad but instead I forced myself to swallow it. However I knew that that was enough for me. No way was I going to have another mouthful.

The afternoon continued with everyone commenting on how nice, tasty, enjoyable, their food was and I tried not to feel resentful, it was my mothers birthday after all. When the waitress came to take the plates away she looked down at mine seeing I’d hardly touched it, and said ‘was the meal not to your liking madam?’, I replied as politely as possible ‘yes it was fine I just wasn’t that hungry’. Maybe I was being paranoid but I was sure I heard her tutting under her breath as she turned away.

Finally it was over though, and I couldn’t get out of there fast enough. Oh, and one passing remark really made my day! My cousin said to me as I stood up from the table, ‘wow you’ve lost a lot of weight you’re really skinny’ I think it was meant to be a compliment, but I felt like saying yes that’s because I’m not bloody well eating! But I kept it to myself.

So there you have it my friends. A day in the life of an Anosmic. Pretty raw don’t you think? That day has always stayed with me but I also feel like I’m healing from it, recovering…not physically or completely, unfortunately that may never happen (mmm think I’ve mentioned that before). But mentally, up in that crazy head of mine, I do believe that something good is starting to happen.

Long may it continue!

Do you have something in your past that you are finally healing from? If you would like to share let me know in the comments.

Posted in Random Ramblings.

Change Of Scenery.

You know what? Sometimes I think…”right Debbie give the Anosmia a rest for a bit”. Even though I am a lot better these days, I feel the need to write something more than about my condition all the time.

Hence the new category ‘Random Ramblings’. On here I am going to write about whatever I want and I hope you will consider it worth a read!

So I’m going to talk about journaling, or writing a diary as they say in the UK. For a start I’m rubbish at it. A couple of days in and I’ve forgotten to write in it so there are these huge gaps, and instead of starting from the day I’ve actually remembered to dig it out,  I try and think back to the last date I should have written in it and go from there.

Bad move, I have a memory like a sieve at the best of times so inevitably I end up making half of it up…as near as I can to the truth mind! diary-picPretty diary isn’t it, what a shame its gathering dust!

I’m sure a lot of you are great at….mm should I call it journaling or writing a diary? How about we call it ‘journdiaring’. Actually saying that out loud doesn’t sound so good does it!

I am actually trying really hard to keep a ‘journdiary’ and when I sit down and focus, some of the things that come out of my brain and onto the paper are a revelation.

Like I’d like to fly away with geese….considering I cant fly and the geese probably wouldn’t enjoy my company anyway that could be a bit of an ask. But to clarify we have a field behind our garden, and in Autumn Greylag Geese gather in readiness to migrate.geese-2 Its an amazing site to see so many of them in the field and then watch them all leaving in one honking bird feathering take off. Yes I know I have a way with words!goose-1But in all seriousness sometimes as I watch them disappear over the tree tops, I get this mad yearning that I want to go with them. Fly off to a different country and get away from the stresses and strains of everyday life. Only for a bit of course I’d come back eventuallygeese-4(These pictures may not be a photographers dream but considering I took them first thing in the morning still in my fluffy slippers and pygamas….no I’m not showing you a picture of that….they are acceptable to my eye anyway.)

It made me wonder as I looked at what I’d written did I want to fly away because I wanted to run away from something. That got me writing even more and I realised I wanted to flying to something, not away. To a better life, a better job, a more fulfilling existence.

The fact is as I sat there I knew only I could make that happen. I am truly lacking in self belief at the moment and this made me really sit up and take notice. I have to push on, start working on my future, a good future, and follow my dreams. Not away from them but to them, chase after them as fast as I can, catch them up and overtake them or even take them over.

Now that’s worth keep a ‘journdiary’ about!

Do you have dreams you are chasing, are you catching them up? Let me know in the comments below , (if you follow this blog). Otherwise please leave me a message on the ‘Contact’ page. I’d love to hear from you.

 

 

 

Posted in Anosmia

Never Give Up

Before my Anosmia took hold, I used to be a singer….but then I stopped, my enthusiasm left me. This got me thinking, what have you given up because of this life changing condition…..

It wasn’t just that one thing though…

  • My health
  • My hope
  • My joy
  • My job
  • My world.

For a long while I gave up on all of it.

So, lets break these things down for a moment.

My Health:

Yes of course that suffered, when you cant taste, or everything tastes horrible why would you want to eat. Don’t eat = lose weight=lose energy=become physically frail, and psychologically frail also. This has a knock on effect of course. Low blood sugar was one for me so I was very weak and had a habit of collapsing quite a bit. Also the lack of essential nutrients, calcium, vitamins, fats….yes even fats, can be so dangerous. A risk of brittle bones, was one I was warned about, due to calcium deficiency. There’s always the obvious risk too, of not being able to smell dangerous substances, like smoke, gas or carbon monoxide, and not knowing when food has gone off. Yep Anosmia is such fun!

My Hope:

Well my wonderfully helpful doctor, note the sarcasm here, now ex doctor. Had a fair bit to do with that one. Did I want to hear the words, “sorry there’s nothing we can do“, or, “there’s no cure”? I don’t think so. But I believed him….well you would wouldn’t you. So that’s hope down the drain then.

My Joy:

That well and truly went, I was lethargic, had no enthusiasm….depressed. I never wanted to go out or socialise. I’m amazed sometimes that I still have any friends left. Crying… I made a habit of that, something I did on a daily basis as well as, yelling, getting angry, blaming it all on God, that stupid wall I hit my head on, my stupid phone I picked up, my treacherous body that chose that moment to crumple beneath me and pass out! I could go on and on but I think you get the picture!

My Job:

I loved my job…do you know what I did? Maybe I told you in a different post…possibly but I’m going to repeat it anyway. I was the area manager of a wildlife habitat. Yes I wandered around all day in beautiful countryside, maintaining fields and woodland, checking on the welfare of wildlife, nest box checks every year. I loved it. Ok there was the paperwork bit, there always is but I usually managed to organise it so I did this part when the weather was crap, oops sorry horrible. Then when it was sunny I was outside….so therapeutic too. However when I couldn’t eat, my energy went, how could I walk around maintaining a wildlife habitat, doing energetic jobs like strimming fields etc, when I could hardly stand up for more than 20 minutes. No I didn’t get fired…they were lovely in fact, but I got made redundant. Was that coincidence, could I have fought against it, who knows? However at that time I was so ill that I didn’t really care anyway, so bye bye job.

My World:

A bit melodramatic?  Nope…I gave up on life. I detached myself from it, I lost the happiness in living. I existed….my world was the house, (that’s not a world). Not outdoors, not my friends not seeing or socialising with my family, just the four walls I stayed in most of the time. Even my wonderful husband didn’t get the love and care he so deserved, and with all he had to cope with…i.e. ME, he should have got a medal!! When I shrank, my world shrank with me.

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That was how it was then. But there’s a light at the end of the tunnel, or the garden in this picture. I’m starting to glimpse it now. My life that shifted to horribly seems to be on the move again and in the right direction this time.

So lets have a look at this list from a new perspective.

My Health:

I’ve started trying different combinations of food to see what works for me. New recipes, smoothies, protein shakes things to build me back up again. Vitamin supplements things that will work for me. Milk, cheese I can manage and they are a good source of calcium. Anything sweet is fine too, a good excuse to eat cake! The smelling harmful substances thing is a bit of a different story however, but we have smoke alarms for the house, and if I’m not sure if food is still ok to eat, I simply don’t eat it until someone has checked for me. Normally my husband….poor guy!

My Hope:

I now have a new very supportive doctor, who has read up on the subject of Anosmia and Parosmia and comes up with ideas and suggestions. Ive also done my own research and found out you can get better from this, not guaranteed but a lot of people do regain some if not all of their sense of smell and taste back. I have also been having some lessons in smell training with a wonderful lady called Chrissi Kelly who specialises in this new method. If you want to find out more the link is smelltraining. She has now become a good friend also, and is very active in my LivingwellAnosmia facebook group.

My Joy:

Would you believe that its coming back! Ok I get my bad days, but I get more good days than bad now. My writing has had a big impact on my state of mind….my blog….my articles have all helped me get it back together. Also my wonderful husband, family and friends who have stuck it out and are now cheering me on. Yes life is starting to feel good again.

My Job:

Ok I’ll never get my lovely wildlife job back and I get sad when we drive by the area. But I have a part time job that helps pay the bills and my work colleagues are very supportive. Also if all goes to plan I intend to expand my writing and generate some income from it one day. I love writing so it would make up for the loss of the other job that I loved. Also  da, da! Ive written a childrens book, about the animals in a wildlife habitat…mmm wonder where I got that idea from! Not published yet as it still needs illustrating but it will be ready soon, and when it is watch out world! I also have ideas about writing a book about my life with Anosmia one day, but that’s another story….literally!

My World:

I’m getting out so much more now. We’ve had a good summer so I’ve been in the garden a lot and on day trips, we even went to the beautiful island of Kefalonia. We used to go there all the time but I wasn’t interested last year due to my depression. But this year we went and it was lovely. We met up with all of our old friends and had a great time. The eating thing was a bit scary at first but we focussed on other enjoyable pursuits instead such as swimming, walking and sitting in the lovely warm sunshine enjoying great company and great scenery.kefalonia-4-18-sept-05-068

 See what I mean!

So my dear friends, the moral of this story is don’t give up on your life….fight this with every bone in your body be strong and claim your life back. Its too short and too precious.

So tell me in the comments, what have you given up…..hang on I’ve not finished yet…then tell me how you are going to get it back again. Re claim your happiness! You’ve got the whole of the rest of your life ahead of you.

 

Posted in Anosmia

Strength In Numbers

If it wasn’t for the support of others, I don’t know where I would be right now. Not as strong and positive as I am that’s for sure. My family, friends and the wonderful groups I have joined and the group I run, has saved me.

To some that may sound a bit melodramatic but its true. When I first acquired Anosmia, I was numb, I truly thought my life was over and I’d never be happy again. I wanted to give up and for a long time didn’t even make the effort to try and do anything about it. My family rallied round, my friends, they were all amazing but I couldn’t pull myself out of this complete depression and the loss I was feeling.

I discovered Fifth Sense, a charity for Anosmia, through the internet and made a half hearted effort to get involved but even that didn’t really help. They were brilliant but I was in such a bad place I needed something more personal to get me going again.

So one day I was listlessly looking at Facebook and just out of interest decided to search for Anosmia groups, and to my amazement found three! I went onto each group had a read through the descriptions and decided to join them all….well what had I got to lose? My sanity had already done a runner ages ago. Once my join request was accepted, I introduced myself expecting nothing in return, then logged out because I couldn’t be bothered by then. At that time I had the attention span of a knat!

I went to bed exhausted as usual, as I wasn’t eating at the time because it either tasted like sh…t, oops sorry, or nothing. Such is the life of an Anosmic.

But in the morning I went and checked my emails and found lots of Facebook messages from the various groups saying things like “we understand what you are going through” and “we are here to support you, don’t feel alone” and lovely considerate, thoughtful comments like that. Some told me their stories and others gave feed back about my own.

All of a sudden I didn’t feel so lost there were people out there like me, who were going through the  same thing and managing, getting on with their lives even! So that was it for me I was on these groups every day gaining strength and a spirit of community from them. breathing-2So much so that eventually I felt I wanted to give something back. That was when the idea of forming my own group began to develop.

I briefly mentioned my group ‘Living Well With Anosmia’ in my last post, called ‘Hi I’m Over Here!’, so I’m not going to go into detail as to the reason for the group, as if you read the last post you will understand this. But what I do want to do is tell you about the amazing people who have joined. My goodness, it puts what I’ve been through into perspective. Some of these brave people had been through awful things like car crashes where they sustained terrible injuries, not only to their heads but their bodies too. Others had been Anosmic for years and were still so strong. Some didn’t have a any support at all.

But there was one thing that stood out from all of them, they wanted to fight, to make their lives better, to find joy in life again. This was great for them but great for me too. It made me more determined than ever to start living again instead of existing and also to help other people do the same.

So fast forward to now, the group is growing and my objective is working. We have a laugh in here together, against all the odds. We suggest food to try, coping mechanisms. And most importantly of all we help each other and I feel I am helping people too. Yes there are bad days for all of us but we can come onto the group and let off steam, get understanding and buoyed up again.banner-2

I love all of the groups I’m in and have a so much to thank them for. But this group, my group are wonderful individuals, strong individuals and I cant ever imagine being without them now.

So if you feel ready to take that next step and reclaim your life please join us at livingwellwithanosmia be part of a new journey.